The Cottage Smallholder


stumbling self sufficiency in a small space

It’s official

 

Photo: Chickens in the snow

Photo: Chickens in the snow

Things have been hectic here at The Cottage Smallholder. I have finally been diagnosed with Chronic Fatigue Syndrome (ME), which developed from the bad kidney infection that I had in summer.
The diagnosis takes a long time as you have to be tested for the full gamut of other potential illnesses (cancer, thyroid problems, TB etc). All those tests were negative and I’ve completed the six months of prodding and poking. I’m now booked into seeing a consultant neurologist on Tuesday.
But I don’t want to dwell on being ill – rather focus on getting better. Danny has private medical insurance for us both as part of his employer’s benefits scheme. That led us to believe that we had a buffer from the long waiting lists for the few N.H.S. Chronic Fatigue Syndrome treatment centres.
When I called the health insurance company to obtain approval for my neurologist appointment, I had to hold the line for a few minutes.

“I’m sorry but Chronic Fatigue Syndrome isn’t covered by your policy.”

 When I asked why I was told.
“Anything termed ‘chronic’ is incurable. We don’t cover chronic illnesses.”
“But it is treatable. That’s why there are treatment centres.”
“Treatment is not a cure.”
“Oh.”

I was deflated and enraged. Incurable – that was a kick in the belly.
When I asked to be passed on to someone higher up the chain she tried to be reassuring. 
“If they discover that there is something wrong with your brain we might be able to help.”

After an hour of ranting in bed with the Min Pins I began to believe there could very well be something wrong with my brain. Then I finally calmed down.

O.K. Aviva I’m going to show you that CFS is curable. Watch this space.

If any one out there has private medical insurance, please check the small print to avoid disappointment.


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44 Comments

  1. Hello Fiona and Danny.

    It’s been an absolute age since I last posted on here, mostly because my life has become insanely busy (got married, moved to Leeds while hubby is still in Bristol, I’m doing a PhD and teaching…) but I occassionally still pop on here when I miss your words and saw your post. I’m so sorry to hear about your diagnosis. Living with chronic illnesses is tough, but I know that you will manage. You two have something so amazing, a bond of love, friendship and support and that is what will get you through this. There will be times when it will all feel like it’s too much to cope with but together, you can surmount any obstacle. Draw strength from each other and take it all slowly. Don’t feel guilty when you set yourself a task to do and couldn’t finish it. And if you do to-do lists, remember that 99% of things do not have to be done within a strict time frame. Allow yourself some slack and try to keep your chin up love.

    My thoughts are with you both. xx

  2. I am sorry for the diagnosis, but there is hope. I will tell you I have two cousins who work for the NHS in England. What you are describing is typical American reaction from insurance companies. Be careful you do not turn into this! Private insurance not all it is cracked up to be; and this proves it.

  3. Hi Fiona

    What can I say – I echo all the comments above. I know you will win through – you are so positive and have a strong “base” to fight this through with Danny and the Min Pins there to support you. Stay strong!

    Wishing you a speedy recovery…

    Jouals

  4. Tamar@StarvingofftheLand

    Fiona — A couple people have mentioned a viral link. It’s a retrovirus called xenotropic murine leukemia virus-related virus (XMRV), and it’s present in something like 2/3 of people diagnosed with CFS (and only a few percent of the general popoulation). So far, no causal link has been found, but the fact of a significant correlation helps take the CFS diagnosis out of the realm of the psychiatric. (There’s an article in the New York Times here: http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=1&scp=1&sq=chronic fatigue syndrome&st=nyt)

    Perhaps if the diagnosis were listed as “XMRV” rather than “CFS” you could get treatment under that moniker?

    Regardless, I’m wishing you all the best from across the pond. Strength, fortitude, and optimism seem to be qualities you possess in abundance, and I know they will serve you well as you battle this.

  5. Hello Fiona, let me begin by saying how much I have been enjoying your blog, which I somehow stumbled across a few weeks ago. It’s also lovely to read so many caring comments. This is the first time I have commented, I hope you don’t mind.

    I am sorry you have been diagnosed with ME, I myself developed ME just over 5 years ago following a viral illness. My experience has largely been slow improvement, with a remitting/ relapsing pattern. I now am able to do a quite a lot of things, and enjoy life, but have not reached full health. I am currently coming back up from a relapse. I’m not able to work, especially as I have children who come first. May I say a few things based on my experience?

    An ME diagnosis is a blow ( thankfully it’s not worse) and can take some digesting. and it can take time to really discover what it will mean for YOU – everyone is different. Give yourself some space for this and certainly don’t push yourself ( you really can make yourself worse) – do what you can as you can, little and often, and protect doing the things you enjoy if you can. Try and keep active, even if it is just a very little, and do things you enjoy but don’t push it. If you over do it and experience payback, take heart and be patient, rest up/ cut back as much as you need – managing ME is not an exact science! Be optimistic. It seems from reading your blog that you have already improved a little (- I do hope that is the case), and that you already pace yourself as you can, which can help a lot. You’ve also got the lovely Danny;) Many people have little idea about ME and what it can mean for the people who have it; I think you only really know when you have it yourself or live with someone who does – my best friend who I know really well had it for years before I did, lets just say I know a whole lot more about it now!!

    For information on ME, management and treatments, research etc etc the ME Association can be a useful starting point for some people, perhaps you have this web address already? Personally I didn’t look at this or other sites initially, I needed to get used to the idea first, and that was right for me.

    http://www.meassociation.org.uk/

    They do have information about the (little) research into a possible viral link, but that is all it is at present, (a little) more research is being done which may in time establish a clearer link. I

    With regard to treatments, I would say first find a kind of equilibrium in yourself before trying any – it always uses energy to pursue these things, and do some research as far as possible. You will get to know yourself what helps and what doesn’t. Some people find things helpful which other people don’t. Support from other people who have or understand ME is really valuable.

    I hope I haven’t spoken out of turn and I’m sorry this is so long! Warm best wishes to you and Danny.

  6. Jane aka:aromatic

    I like your attitude Fiona and now you know the diagnosis you can face this head on! I know you are a strong person and through the hard times you have battled on with life and things that you love and also found new things to love. I am sure you will get through this and all of the bloggers that adore you and follow your blog are with you all the way!! As for the insurance company well you just show them!!
    With Much Love, Jane xxx

  7. Jo @ LittleFfarm Dairy

    Wishing you Well again, Fiona. It’s awful to get such depressing news – but at least the terminal ‘nasties’ have been ruled out.

    The fact that you can still write the Blog, care for the hens & dogs, do some gardening & have such a thriving gateside stand with a wide variety of home-made goodies thereon, shows how determined you are not to let this beat you. I have every faith you’ll get your health & your life back; we are all thinking of you & rooting for you! And Danny too – you’re such a pillar of strength to Fiona, she’s a lucky gal!

    Best wishes dear friend, may you soon beat this thing & prove those Insurance company eejits wrong.

  8. As the subject has been raised I would like the caring people who read Fiona’s blog to know that not everyone recovers from ME. Most do but there is a significant proportion who have lost for ever the chance to have a normal life and there are those who remain bedridden and some die from the complications. I just wish to speak for them.

  9. I just want to say a huge ‘Thank you’ to all you people for your fantastic support and really helpful and uplifting comments.
    It’s an old cliché to say that it means so much to us but I cannot think of better words.
    It just does. Believe me.

  10. One of my bestest friends has had ME for years, and manages it so she can hold down a full-time job in senior social work and an extremely busy social life. She has bad days, but don;t we all. I had a Post Viral Fatigue Syndrome for over a year after a bad bout of flu, so I have an inkling of what you’re going through, in my case, by the time they diagnosed it, I was mostly over it. I get odd flare-ups from time to time, but nothing major. ME CAN be managed so you barely notice you have it, so chin up girl, and if you want any advice, let me know and I will ask my friend Kath to get in touch.

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